At Q- and C-support we are convinced that we need the input of patients to properly organize our services. So that they meet the needs of the patient. To do this, it is necessary to properly organize the input of patients. A working group of Q fever patients and post-COVID patients, together with several professionals, has written a plan on how we can best organize this. An important part of that plan is the PEP (Patients and Experts by Experience Platform). After a recruitment campaign and job interviews, the PEP has now officially started.
The PEP consists of three Q fever patients*, three post-COVID patients and an independent chair. Together they will advise the director of Q-support and C-support, solicited and unsolicited. This can be about existing and new activities and projects, but also about policy. In addition to the PEP, there is a flexible shell of experienced experts who play a role in various activities; from intakes to training courses and projects.
Get to know each other
On Tuesday 22 November, the members, together with the independent chair, first got to know each other. They were then welcomed to a joint lunch by director Annemieke de Groot and two members of the Supervisory Board: Frank van Beers, chair, and Hester Rippen, the RvT member with patient participation in the portfolio.
- Dirk-Jan van den Biggelaar replaces Jacqueline van den Bos who has indicated that she wants to take a seat for one year. The first year the PEP will therefore consist of 7 members.
We briefly introduce the PEP members:
Sandra van Vrijberghe de Coningh, post-COVID patient:
'I always want to make the world a little more beautiful, both in my work and in my private life. Now I can use my experiences, also as a patient, for an organization that is already doing a lot and still has a lot to do.'
Mike van den Nieuwenhof, Q fever patient:
'We have fought for recognition and acknowledgement for so long. It seems that this is less true for post-COVID. But there is still a need for an organization that offers good aftercare, even in the event of new outbreaks. I am happy to contribute to that.'
Jacqueline van den Bos, Q fever patient:
'I was in the working group that prepared the PEP. I actually did not plan to join the PEP, but it is important to bring the patient perspective into the organization. I want to help with that for a year, so that together we can give the PEP a good start. After the introduction this morning, I am even more excited.'
Monique Hoogakker, post-COVID patient:
'It is very important that the experiences of patients - including mine - are included in all facets of the organization; policy, projects, research, etc. Also with parties outside the organization. Let us learn from the suffering of Q fever patients and build on this. It is thanks to the efforts of Q fever patients that we can now turn to C-support. They pulled the chestnuts out of the fire.'
Marian Grethe, Q fever patient:
'I think it is important that the services of Q and C support are well aligned with the needs of patients. As a Q fever sufferer, I want to share my experience and contribute to more adequate care and guidance.'
Ment Gillissen, independent chairman:
'Independent mainly means that I do not have Q fever or post-COVID, so I am a bit more removed from the daily problems that this entails. I have worked a lot in organizations that stand up for the interests of people in vulnerable positions such as patients and the elderly. At PGOSupport, for example, which supports patient organizations. I am now retired and I would like to contribute to the PEP. So that we can do the right things with Q and C support in all those areas where people experience obstacles.'
Bertineke Boon, post-COVID patient:
'Tailor-made care requires professionals with up-to-date knowledge and an eye (also in the long term) for patients and the context in which they find themselves. Because the experiences with infectious diseases such as Q fever and Corona and their (long-term) consequences for patients are relatively limited, there is still much to discover, learn and develop together. I think it is important that (after)care for everybody available, also in the event of new pandemics. I would like to use my knowledge and experience for this, together with others.'
Dirk-Jan van den Biggelaar, Q fever patient
It is important that the experiences of Q fever and Post-COVID patients are taken seriously when making policy, research, (after)care, projects, etc. As a Q fever patient and given my medical background, I would like to contribute to this as a member of the PEP.
Unfortunately, Bertineke Boon and Dirk-Jan van den Biggelaar were absent from the introduction and are therefore not in the group photo.
